IBD Summit for Fellows 2019: Reflections

Updated: May 14

Living with IBD is a complex journey of ups and downs. Each of us patients seem to have our own set of unique challenges and personal needs to support our care. Many of us also have individual preferences, lifestyle changes that we have to adopt, and short and long-term goals that require consideration when managing a chronic illness that can be so unpredictable and impactful on day-to-day life. For this (and many other) reasons, finding good care from a good doctor is vital to managing IBD.

Unfortunately, many patients have stories of care that wan't so great... to put it lightly. I, myself, struggled with quite a few difficult clinicians who weren't skilled and/or willing to manage the disease with me, and it had a huge impact on my quality of life. For this reason, years ago, I made it my mission to figure out how to support an evolving relationship between IBD patients and their providers.

Following yesterdays conversation at the San Antonio IBD Summit for Fellows 2019, I have to say that I'm more sure than ever that we are seeing a big shift in how IBD Specialists are viewing their role in managing the disease alongside their IBD patients. The conversation was filled with genuine curiosity, warmth, caring, and a STRONG desire to figure out how they could adopt practices that would make their patients feel most supported.

I feel so energized by the conversation, that I don't want it to stop there. So, below, I've summarized a few of the main points that I made throughout the two days that we spent together, in hopes that we can continue thinking about IBD care differently.

Managing the disease is a journey, so focus on an evolving discussion that will grow and change over time. Invest in dialogue with patients that supports getting to know them as individuals, teaching, coaching, and partnering in care discussions and decisions that help keep individual needs and preferences at the forefront, whenever possible.

A relationship built on communication and trust is key to help patients feel hope in tough times and supported when things feel uncertain. We want teamwork in managing this disease. Seek to understand us and why we're asking for the things that we need. Patients want to trust that our best interests and preferences are at the center of our care. It's also OK if part of that communication means that you actually have fun with your patients, too. We're a pretty amazing group to get to know...

Please know that how I experience the disease is just as important as managing inflammation and mucosal healing, and should be a part of the discussion. Know that we want to gain some sort of control over what is happening to my body. In fact, the mental stamina that is required to fight this disease day-in and day-out relies on my willingness to get up each day and keep trying to figure this thing out. Support me in that fight and be willing to get creative, think outside the box, and talk with me about things that help improve my management of symptoms and disease experience, in addition to the meds that will manage the inflammation -- sometimes this means that diet, exercise, my ability to work and have fun, etc. will be a big part of the discussion.

Please listen to - and believe - patients. Often, appointments involve a lot of assessment and diagnosis with little time for listening, so whenever time allows, please make sure to ask questions and try to help patients feel supported by actively listening to hopes, fears, concerns, and celebrations, too. It should be noted, that many of us have difficult experiences with disbelieving clinicians (and sometimes family members!) which led to delayed diagnosis and prolonged suffering.

I felt so supported in the room yesterday that I even had a vulnerable moment on stage when recalling some very hard memories of early days with the disease, that's how supportive this group of IBD fellows made me feel. My genuine thanks to them for creating such a wonderful space, listening, asking a lot of questions, and for being such an active and excited group to help progress care for patients with IBD!